Stepping Stones

From an early age, our son was enthralled with pathways and trails. Crawling on hands and knees, he first plowed them into existence by brushing his forehead and a fist-sized truck through the long shag carpeting. Outside, he’d construct routes and loops through the fallen leaves or snow in the yard—and play in them until his mother got too cold for him and called him in. His first scribblings depicted not objects, but destinations. His curving, crayoned lines connected with others, which in turn linked to many other purposeful pathways. And as his spatial giftedness developed, so did the intricacies of his routes, maps, mazes, and other convoluted designs. As a little kid, he often tried to follow painted footprints to an entrance, or ALL the trails in a park, or colored tiled pathways through a mall to wherever they eventually led. And whenever he learned anything that caught his special interest, he would pursue that trail like a hound on a scent. Because the journey, apparently, was everything. As a distinctively oriented individual in a mostly contrary world, he soon split for a divergent track of his own making. And before we fully realized it, we had joined him in the odyssey, unprepared as we were. From the distinct advantage of countless wayfinding steps more than twenty years in the making, we are now able to tell the tale of our passages. But at the time, we hadn’t a clue to the route, or the fuss we would create. We didn’t ask to be pioneering pathfinders. As the first student in the school district diagnosed with Asperger’s Syndrome, our son unfortunately became the blunt instrument of change it required but didn’t know it needed. And together we hacked a way through unknown territory—at times without so much as a candle flicker to light the next footstep. For us, it became an arduous journey through a bewildering slough of raising a child who, despite appearing to have every advantage, somehow does not. A child who wants to be happy and fit in, but somehow cannot. A child who has every yearning to be treated respectfully and justly, but is not. Being born an individual who intrinsically thinks and learns and communicates differently than most of the rest of the world is straight-up hard. It is tremendously challenging and often extremely discouraging. But there are unique benefits of gifted perspectives and proclivities too, often hidden from both that individual and that world, which take patient, strenuous work to uncover, develop, and refine. The role of the parents, siblings, caregivers and other advocates? That’s definitely hard too, but we have several mitigating advantages: We are not immersed 24-7 in those same first-person problems and can catch breaks for relief. We have much better insight into how society functions, with its boxed-in expectations and limited tolerances. And as such, we are in a privileged position to better interpret between a special needs child and a world whose attention is full on itself. Yet neither we, nor anyone we knew, had ever traveled this way before: it’s the pioneers, after all, who push through the hardships to open new territory. Expressed more bluntly: the first through the glass wall gets the bloodiest. This then, is the story of the paths we carved while raising a child on a high functioning sliver of the autism spectrum. At first, we didn’t even know the lay of the land, let alone what would confront and erode us along the way. Each step forward was a gritty, stony, stumble in a territory unmarked by directional signs, boundary markers, or GPS coordinates. And while our story of nurturing a child who is “different” is distinctly ours (before and after the illuminating insights of a diagnosis), it is certainly not definitive. In this aspect, knowing that there are many whose frameworks and backdrops differ considerably from ours, we attempt to be as inclusive as possible, speaking to the basic human aspiration of doing what we can, with what we have, where we are. We are eye-witnesses to the power to choose a better attitude, to try again, to continue to strive, to wobble toward progress, no matter our starting point. So we offer encouragement to the great, diversified range of parents, caregivers, therapists, and support networks—as well as the individuals who are on the autism spectrum themselves—as our like-missioned, kindred spirits. That’s where willful living is done. And where our wayfinding proceeds: amid the clash of personalities and the clutter of togetherness in a supportive family of co-adventurers. Because the journey, in fact, is everything. It’s along that pathway that we find love, courage, hope, faith, learning, acceptance, humor, chance, excitement, outrage, rebellion, growth, failure, trial and triumph: darn well everything that can round out a life well-lived. And having blazed a way through, we share our observations, mistakes and insights, so our co-explorers on the autism spectrum may be able to proceed with a bit more guidance, a bit more confidence, a bit more success. But we are parents, not psychologists. We are experts only in our own experience. So we bring wisdom from the professionals who have devoted their careers to studying the full scope of what being a person with Asperger’s Syndrome means, and how they typically behave. With that perspective, we invite you to share in our challenges and choices as we recount the eventful growing-up days of a special boy with an amazing gift called Asperger’s Syndrome.